Hello, I am a new member and I am a polio victim since the age of 3 yrs in 1948. I am happy to be a part of your discussions and wish for each of you a great day. I had polio in the right lower leg and have tried to overcome any disability over the younger years, but as I became a young adult, things changed and more corrective surgeries took place. Still trying to overcome, I have made it pretty well until the last few years and at age 60, I am falling, swelling, experiencing more pain and soreness, depressed at times, numb, and I could go on, but I am sure someone is having the same symptoms.I am in North Carolina and I need a Dr. that is familiar with polio as my doctors are now deceased or retired. It seems most medical drs. are unimformed about polio and as my condition is changing I need a PPS expert. Any ideas?
Thanks,
Lucky Dog
I have a friend with PPS that has asked me to inquire whether having PPS is a forerunner of any other muscle or nerve disease. She is getting weaker and weaker. Has been in a wheelchair for the last 10 years, cannot walk at all. Always used "sticks" before she had to resort to chair. She wonders if her weakness could be from somthing else that they are overlooking because of her PPS. Is losing her strength in arms and hands and more fatigue lately. She is a person taht is mentall very strong and doesn't give in to things normally, lives alone and does all her own work. She was told that she would not get worse but she is. Appreciate any info I could give her. Thanks in advance.
Canyondweller...With my caveat in the first post in mind: 1. Who gave her the information 2. It's easy to lump all physical problems into PPS 3. Sounds like classic PPS progression to me..exactly like my own. Diagnosed with PPS around '85. went from walking with full length brace on my right side, then a crutch, now a combo of wheelchair and crutches and brace for very small walks. Mostly the chair which my wife pushes at Costco, etc. because a manual just weakens my shoulders and arms. Any of this sound familiar?! I can use the crutches maybe 30 yrds once a day and have to rest. Always use motorized scooter around the yard, motorized wheel chair around the house (look out for cat tails!)Please email me any time! Johnny
LuckyDog - first of all, you are a polio SURVIVOR, you are no longer a victim!!! PPS is a steady, progressive issue - no magic pill, no treatment, no cure (sorry, but I knew that from the research I did, and the doctor i found that KNEW about PPS gave me the same information) I would recommend getting the book The Polio Paradox by Richard Bruno - he's researched and worked with polio survivors for years. It would give you a lot of information that will help you. If you can find a physiatrist, they are generally knowledgeable about PPS, however, if you find a doctor you like, gift him with the book or ask him to read it to understand how your body works. A good doctor will do this. The book is a good level for a doctor, but is easily understandable for us every day folks.
My doctor explained PPS this way, two glass of water represent two people, one has had polio and the other has not. The 'has not' has a glass filled with strength and energy to last him the rest of his life, the person who has had polio has a glass with strength and energy in it, but it is only half full, because the polio has taken the first half. As we age, normal progression is that strength and energy diminish, and the person who has had polio has less to get him through life, and his glass will empty faster that the other guys.
Not a pretty thing, but I think this illustration helps people to understand in a simply way what we and our bodies are going through.
Hello, I am a new member and I am a polio victim since the age of 3 yrs in 1948. I am happy to be a part of your discussions and wish for each of you a great day. I had polio in the right lower leg and have tried to overcome any disability over the younger years, but as I became a young adult, things changed and more corrective surgeries took place. Still trying to overcome, I have made it pretty well until the last few years and at age 60, I am falling, swelling, experiencing more pain and soreness, depressed at times, numb, and I could go on, but I am sure someone is having the same symptoms.I am in North Carolina and I need a Dr. that is familiar with polio as my doctors are now deceased or retired. It seems most medical drs. are unimformed about polio and as my condition is changing I need a PPS expert. Any ideas?
Thanks,
Lucky Dog
Hi Lucky Dog,
I had polio in 1959 at the age of 4. I do have the same problems as you do. I go the Spaulding Rehabilatation Hospital in Framingham, MA. My docotor specializes in post polio and his patients come from all over the United States.
You can find information online about this hospital. You go for a 3 day evaluation then again in 6 months. Then once every year. My doctors name is Dr Darren Rosenberg. He is quite good. I cried when I first met him because finelly someone knew and understood what I was going thru.
I wish you good luck
p.s. My husband calls me Lucky because besides the PPS I also have Diabetes.
